Northampton colorectal support group

Thursday 20th June 2013

Summer 2013

Angela O’Dell, Macmillan Colorectal Clinical Nurse Specialist, describes the early development of a colorectal support group.

At Northampton General Hospital NHS Trust, we see a large number of patients with colorectal cancer, not only from Northampton, but from surrounding areas too. The clinical nurse specialists (CNSs) at the trust had come to recognise that because of the nature of colorectal cancer, many patients need support to come to terms with their diagnosis and the long-term effects of treatment.

Patients would regularly tell us that they simply wanted someone with whom they could share their experience. With advances in treatment, colorectal patients are living well for longer. Many of our patients who had been through most of their treatment, and were living beyond their cancer, told us they simply wanted to help others.

The CNSs were aware, too, that there was little, if any, support beyond standard treatment follow-up, and nothing in the Northampton area that addressed survivorship needs. Over several cups of tea, the CNSs agreed that a support group was needed. We agreed to ask our patients if that’s what they wanted, and their answer was a resounding yes.

A strong turnout

We began by agreeing on invitation criteria: patients who had completed treatment but were still receiving routine follow-up. We then sent out letters inviting patients to an inaugural meeting. We piloted the group with patients who had completed treatment, accompanied by their carers. We were overwhelmed by the turnout to the first meeting.

We allowed time to listen to each and every patient, exploring how they felt and what they wanted from a support group. The group agreed that meetings should be open not only to patients who had completed treatment, but also to those still receiving treatment and those whose cancer cannot be cured.

The group has met three times now and continues to grow. We meet every two months except during the summer. Each meeting begins with an informative talk from an external speaker, such as a dietitian, an alternative therapist or a benefits adviser. The remaining time is devoted to open discussion.

Different skills

Northampton has three colorectal nurse specialists, working across both the surgical and oncology pathway, ensuring that patients receive physical, psychological, emotional and practical support from a keyworker throughout their cancer experience. As a close team, we all attend the support group, each of us bringing a different set of skills. Our patients tell us that sharing their experience with others and feeling that they are not alone has made a significant difference to them.

It is still early days but we hope that the group will continue to grow and evolve.

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Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). A company limited by guarantee, registered in England and Wales company number 2400969. Isle of Man company number 4694F. Registered office: 89 Albert Embankment, London SE1 7UQ.